Monday, July 25, 2011
We went to the scan today at three. I had a bad feeling leading up to leaving for the scan. On the way there, I started to panic. I guess it was written on my face, the nurse who did the scan hugged me as soon as I sat down my purse. She started scanning me and stopped about three minutes in, said she needed to see the Dr. I asked if she was gone. She said yes. It hurt like nothing I've felt before and I've lost my father and a woman who meant the world to me. I've known pain but I've never known pain like this. My daughter is gone. My fourth child is with those two people who mean so much to me and she is with my God. I would give anything to have been her mom here on Earth but that was not His plan. As much as I want to be mad at Him because that is how I've been dealing with loss before now, I can't. My heart is just broken. I never did the research on miscarriage like I should have and I am going into this completely ignorant. When we found out about her diagnosis, I made a choice to do whatever it took to give her a chance and some would say I took the harder option. Now I was given the choice to bring her into this world the easy way by D&E, which includes dismembering my daughter OR doing it the hard way with full labor and delivery. This decision was made just as easily as the one before. I want to meet my daughter with her body as God intended. So please pray that I am safe and there is no uterine rupture as this is an induced vbac. Please pray we have the strength to face whatever happens tomorrow. I'm worried about what will happen but I have faith that Dr Duke will take great care of me. I've never heard of such a kind doctor like she is. Just three years ago she cried with me when we just couldn't conceive our third child and I wanted to be pregnant so badly. Today she cried because we had lost our fourth child. James found a funeral home that will cremate Gracelynn for us at no Charge. I had written out a list of local funeral homes and it was the first one he called. Newcomer Farley. Thank God that is one less thing to worry about. Thank you for your prayers and all the offer of help from family and friends. It means so much to us.
Sunday, July 24, 2011
Okay. For any family and friends reading this, I'm sorry I kept this information to myself. I just hate being looked at and felt sorry for and didn't want to talk about it. Yesterday I threw a graduation party for James. I can admit now that I went a little overboard. I spent about 8 hours cooking and prepping on Friday. Got up early on Saturday and did another 4 hours cooking. The party went great. I was up most of the night with Addison so I was pretty exhausted. I tried to just smile and put it off. Towards the end of the party I started to feel like I had really pushed myself too hard. After most people left, I used the rest room and found brown blood while wiping. I am sorry if this is TMI, but this is what having a scare during pregnancy is all about. I immediately freaked out a little. Wiped until it was gone to see how bad it was. I called into my OBs answering service. An OB called right back. Basically she said brown is old blood (I knew that) and that it could mean a few different things. Ultimately it was either my cervix was opening and I was going into premature labor, OR it could be the result of James and I doing the deed earlier this week. This was after we crossed a few other things off the list it could be. I had no red spotting beforehand and I heard the baby's heartbeat the night before so it wasn't a miscarriage. She said I could go to L&D, but there was nothing they could do for me. I decided to just go home and rest. After all, I'll see a Dr tomorrow (Monday) and they'll be able to see if my cervix is shortening and if the baby is fine. I just felt the baby move just a second ago so I am confident she is alive and kicking. I've also heard her heartbeat several times since getting home last night. The brown stuff went on all night and there has been a bit today even though it is almost nothing now.
I've been feeling really sad and stressed out. I don't want to lose her. And even if I have to lose her, I'm not ready for that. I need to carry her and get to know her more. I just need to be her mommy for longer. I'm not ready to have my fourth child and lay her to rest. This stuff is really starting to get to me. I feel like I am losing my mind. I have so much respect for these moms and dads carrying to term their babies who have no chance at life. I don't know how they do it. Me with my 1-2% odds, and I'm barely holding on. But my odds are better than what some have. I just need Gracelynn in my life and my kiddos need her too. James is so supportive and loving. He came home last night and really stepped it up for me. McDs breakfast this morning in bed. Dishes and laundry done when I woke up from my nap. He is amazing. He wants Gracelynn so badly too. I wish I could promise him that I'll be able to carry his daughter and give birth to her alive.
Tomorrow we will see her at three. We are praying for everything this time, that we prayed for last time.
- Cystic Hygroma has shrunk or not gotten bigger.
- Her hydrops is gone or hasn't gotten worse
- She is measuring like she should
- Plenty of Amniotic Fluid
- We can get a good look at her tummy and see for sure the herniation is gone
- She is moving around and her heartbeat is strong
Tuesday, July 19, 2011
What a difference the planning is with a normal pregnancy and one like what we are dealing with. When I had my other children, I had at least half their wardrobe, crib set and baby stuff picked out or bought after finding out their sex. I want to pick out bedding for Gracelynn. I want to figure out what scripture or saying I will get to put over her crib. I want to start buying those sweet newborn gowns. What I wouldn't give to buy her a sweet little pettiromper off etsy. Why aren't I buying all these things for her? Because they would be HER things and if something happens to her, they will remain HER things and they will be kept by me forever. It not that I wouldn't want things to remember her by, it's just that I am not sure I could deal with keeping a whole bunch of clothes, bedding and baby stuff of hers. I have read that most parents in our situation, go and buy just a few really nice pieces to have in case she does pass away and then if she doesn't we would have those special pieces for her when she arrives. I am considering buying a sweet outfit and blanket in the next couple weeks for Grace. Maybe having them embroidered.
So what are we planning, if we aren't planning the fun stuff? This past week we have been deciding what we will do if Gracelynn doesn't make it We have decided that we will have her cremated and hold onto her ashes. I plan on getting cremated myself, so I feel fairly comfortable choosing that for her. But mostly it is because I would want any of our children to be buried next to James and I. We aren't in the position to buy multiple plots at this time, so burying her wouldn't work. Then there is the worry about how will we afford it? We are struggling already, but I have read that there are programs out there to help parents who lose their children. So these are the kind of decisions we are making at this time. I just don't want to be blindsided if she does pass away like they say she will. I want James and I to be united on these decisions now to alleviate the pain or stress later. It's just not fair. It's really not. Sometimes I feel like I can't handle having to think about this stuff. I knew it was in our future when we decided we just couldn't terminate any pregnancy, lethal genetic condition or not. I just didn't realize it would hurt so badly. I didn't realize the days would just drag on.
We get to see Miss Grace next Tuesday. I am so afraid of what we will see. Will her hydrops have gotten worse? Will she be measuring small? Is all my constant hydration helping her or will she have low amniotic fluid? I am just terrified. As the weeks go on, I love her more. It's one of those things, you don't believe until you live it. You think you love your husband or your children and you couldn't possibly love them anymore than you do now. And then 5 or 10 years pass by and you know that there isn't anything you wouldn't do for them including lay down your life to save them. I want to be her mom so much it hurts. I would do anything to raise her alongside my other children. She is a Burke. So keep praying for my baby girl, please. I appreciate it. I really do. It's all we can do for her and it means the world to me.
Saturday, July 16, 2011
Here is what happened. On Monday night, a really bad storm came through. When I say bad, I mean like branches breaking off in the road, trash cans flying out in front of you and buckets of water pouring out of the sky. I picked the kiddos up from VBS and went to bring home one of Lily's friends that had went with her to church that night. I was driving north on Brandt and almost ran over (into) a small tree in my lane. I was able to get over without having an accident. I decided that I would just pull into McDonalds right there and pull the small tree out of the road to help others. It didn't look heavy at all. As I started to pull it up on the curb, I realized it was heavy and I would have really messed my car up if I had hit it. And then I realized how stupid it was for me to be pulling this heavy tree up. I've always been careful during my pregnancies, but I've been known to move small furniture around on my own. I immediately got really upset and mad at myself. This pregnancy is different than my others. This baby is fighting for her life. I told James what I had done as soon as I got home and he tried to reassure me that she was fine. The next day was nerve wracking and upsetting. I thought for sure she had passed or I had hurt her. I spent most of the day in a panic. I ended up getting pretty freaked out and told James he was either going out and buying me a doppler that evening or he was taking me to the hospital to see if they could find a heartbeat. He got online and ordered a fetal doppler that night. He paid extra for two day air, but it came on Wednesday in just under 16 hours. We heard her heartbeat immediately. 165pbm. I've been able to hear her heartbeat a few times a day since then. It's such an assurance. I can't even begin to describe how it feels to go about your day wondering if you are carrying a baby that has passed. I do feel her kicking, but it is random. I will be 18 weeks on Tuesday. I am relieved to be another week farther along, but until I get to 26 or 27 weeks, I won't feel any kind of relief.
Sunday, July 10, 2011
Well. This weekend wasn't easy. I'm just feeling kind of panicky and upset. I've tried keeping my mind off of the unknown future of our child, Gracelynn. But, it's starting to get to me five weeks after finding out something was wrong. I'm exhausted. I'm either up all night reading blogs and posts and trying to figure out what our odds are. Or. I'm having nightmares and strange dreams about what is going on in our life right now. I can't sleep and even when I am sleeping it isn't restful. I feel like I am just totally focused on how I am feeling and whether or not Gracelynn will make it. There just doesn't seem to be room in my heart for anything else. And of course that makes me feel like crap. I have four other people who need me focused on them.
I ordered a book today called I Will Carry You by Angie Smith. It's 12:30 at night and I've watched about a million youtube videos this evening about Angie Smith and her husband and their experience with the fatal diagnosis of their fourth child who just happens to also be a girl. I am in wonder of this woman, to put it lightly. I wish I had her grace and resolve to just trust. I am having such a hard time trusting right now, right this second. I am finally headed to bed to hopefully get some sleep but I just had to share this video of the song Angie and her husband wrote for their daughter, Audrey. It's so beautiful. My favorite part was "I will praise the one whose chosen me to carry you." I know I should praise HIM in this storm, but my heart is just so heavy today. So heavy. I'm going to pray for more strength tonight and see what tomorrow brings.
(you'll have to copy and paste the link...sorry.)
(you'll have to copy and paste the link...sorry.)
Tuesday, July 5, 2011
We had our ultrasound this morning. The scan took about an hour. The nurse went over everything twice it seemed. We didn't get the worst news, but it could have been better of course. Her cystic hygroma is 17mm. A growth of 8 mm in 4 weeks. The Dr seemed unconcerned about the CH. He said he sees babies with large CHs and they just disappear later on in the pregnancy. They believe that her omphalocele is not there or if it is, it is minor. Miss Gracie wouldn't take her hands away from her umbilical area so it was hard to get a good look. Her heartbeat was 170 bpm. They referred to her as a strong baby. She was moving and even stretched out for us. The tears came after witnessing that. She did have some fluid in her abdomen, but not a large amount. When they measured her abdomen, I saw that she came up with it being the size of 18weeks. I'm 16 weeks. He did say it was technically Hydrops, but it wasn't a severe case.
The Dr came in after the scan to talk about the measurements. I did get a little loud with the Dr at one point. I couldn't help myself. I got kind of loud with him because he mentioned talking to a genetic counselor. I couldn't help but feel like I didn't need one because I know what the dx means and I don't want to talk about termination. I just had to be sure he understood we were moving on with our pregnancy no matter what these ultrasounds came up with. He seemed to think maybe I was online reading stories of girls with mosaic Turner Syndrome and not stories of girls with Monosomy X. It just pissed me off because everyone in the office has referred to it as Turner Syndrome, so that is why I refer to it that way. I understand that she has full Monosomy X and has the least chance of making it to term. But it is Turner Sydrome. I told him I would be happy to see the genetic counselor if he thought it would help us. He made it clear that our odds of Gracelynn making it to term are very, very low. I'm hoping from here on out, he understands that I don't need to be reminded. I know what our odds are and I would like to be optimistic about everything.
He did upset me a bit too when he asked how many other children we had. He asked their ages. He said something to the effect that he thinks we are going through something very stressful and he couldn't imagine having to deal with what we are dealing with in addition to having to deal with our other children not understanding what is going on. He kind of looked at me like he pitied me. It was that moment there that made me realize just why I don't want everyone we know to know our struggles. I don't want pity. I don't want people to feel sorry for us. James and I feel blessed to have this child. Sure our hearts hurt and we are more than a little stressed, but this baby is a miracle and we were chosen to be this miracle's parents.
We ended up seeing a genetic counselor and spoke to her for about an hour or so. She was very kind and optimistic. She took a detailed health history of our our kids, our brothers and sisters, our nieces and nephews and our parents. She asked how much our kids weighed at birth and when they came during the pregnancy. She did speak about TS to us for a little bit but she couldn't really give us any information we didn't already have. She said she would look into what kind of pediatrician we would need for her if she makes it to term. She is sending me a bunch of information in the mail as well. She apologized that I had to find all my information about TS by myself. They all seemed kind of surprised that James and I knew all that we did. I did find out that we will need to look at Gracelynn's heart at about 22-24 weeks and we could do that there or we might have to go to Children's. This fits with what I have read from other TS moms. We also talked about where Gracelynn would have her heart surgeries if she needed them. I was more than a little disappointed to find out that those surgeries are done at Cincinnati Children's Hospital. How can I see my newborn everyday AND take care of my other three children at the same time?
I've already considered the financial burden repeatedly driving down to Cincinnati and staying in the Ronald McDonald House will put on us. December is already a tough month for us. I feel like warning our family now that if our prayers are answered, we won't be able to afford Christmas this year. Of course that is a long way off for us.
Monday, July 4, 2011
We have an appointment tomorrow morning at 10 am with Perinatal Partners to have an ultrasound and see how Gracelynn is doing. I need prayer. I know that when I pray for her, it helps so much. But I can feel in my heart that I need others to pray for us as well. I am having a really hard deciding if I should be telling everyone I know that our baby needs prayer. I just can't stand the thought of people knowing the struggles we are facing. But on the other hand, I feel like prayer will lift my heart and help Gracie so much. I'm going to spend the next week really trying to figure this out. So these are the things that we would like to see for Gracelynn specifically tomorrow.
- Gracelynn is alive and kicking and thriving. I have felt her kick yesterday and today for sure so I have great HOPE that she is still alive.
- We would love to see that Gracelynn's cystic hygroma has shrunk or at the very least, not gotten bigger.
- We are also hoping that her omphalocele (herniated intestine) has moved to where it should be and that the initial Dr was wrong to assume it was even a true omphalocele. She was so quick to diagnose a fatal chromosomal anomoly.
- We are praying that Gracie has not developed hydrops. This can be lethal. It would indicate that she isn't processing the fluid in her body correctly.
I will update tomorrow with what we see. I appreciate every prayer said for our daughter. We can't get through this without the love and support of our family and friends. Thank you from the bottom of my heart!!
Friday, July 1, 2011
So today I am feeling kind of HELPLESS when it comes to the baby. I feel like I am just waiting around for something bad to happen and I can't focus on what is going on in our lives when it comes to NOT worrying about the baby. I feel like I can't make even one decision for my family at this point. I can't plan out meals. I never went and bought the kids anything to wear on the 4th of July. I can't even push myself to work on my Scentsy business. I start back to school this Wednesday and I am really worried that I'll be too distracted to do it. I need to plan a graduation party for James and I am totally confused about what the first thing is that I need to do. I picked a date, what's next? I think I am just too worried, too tired and too stressed out to be the mother, wife and friend I need to be. I am not sleeping at night and I think that is part of my problem. I have 4 or 5 dreams a night about Gracelynn. Last night I dreamed she passed away at 24 weeks. I can only remember bits and pieces from the other dreams.
Well, I will get to see the baby on July 5th. We have an ultrasound scheduled with the peri Dr that did my CVS. The nurses will go through and measure Gracelynn again and just look her over more thoroughly. We are hoping that her cystic hygroma has shrank or at least not gotten bigger. You can see it on her 12 week U/S photo. It was 9mm in that photo. Normal would have been anything under 3mm. We are hoping there isn't an issue with her intestines, that they just hadn't had a chance to move where they needed to be yet. We are also hoping that she doesn't have hydrops. I have been drinking water like crazy, hoping to help her with her being able to process fluid better. I have done a lot of research with other moms and I have read that TS girls have issues processing their fluid and that is why they have cystic hygromas, hydrops and low amniotic fluid. I have read stories from women whose baby's hydrops or CH miraculously went away later in the pregnancy. I have read stories where the TS girls doesn't make it. But I have hope. I am just hoping for good news on Tuesday. I am afraid there will be no heartbeat and she will be gone, but I will have James there to lean on and we will get through it. I just pray I will get to be her mama. I'd love to hold her in my arms one day.